AMERICA – FibroM.E.-Awesome

I really, really need to bathe. Let’s start there.

Why don’t you take a bath Mary? Great question. I’m running on fumes, that’s why. I’m not just low on energy but also have that Bone Crushing Weakness going on, and it turns out the whole “cleaning-up” process requires much more exertion than you’d think. And you wouldn’t think about, because it’s not something you think about when you’re well. When you have a steady supply of energy on tap. A shower is just a precursor task on your way to doing other things. When you’re chronically ill, showering becomes the thing.There is no after. No next. To Do List: Bathe. End of to do list.

Not until I was at the mercy of illness did I understand the physical toll of hygiene and general appearance. This is mostly the reason that when I’m not out in public, I look like a deranged, color-blind Craigslist Killer. Just to give you an idea, besides my obvious and immediate desperation for a bath, I am currently wearing these green-striped pajama bottoms with mis-matched socks and a Hanes His Way V-Neck white t-shirt. This is actually one of my more cohesive looks, except that I ate a pomegranate last night and the dark crimson juice has splattered all across my chest. Did that motivate me to change my shirt? No. So now not only am I dangerously close to exceeding the point of no return in terms of lost humanity due to lack of cleanliness, but I also look like I’ve been bleeding, or that I made someone else bleed, which adds a concerning urgency to whatever it is I have going on right now, but I still can’t be bothered enough to do anything about it. So I just go on living my life and all this has really upped my game in terms of just how insane I can look on a Wednesday without really trying at all. Some would call that impressive! Anyway, I’d love nothing more than to do my laundry and my hair and alphabetize my life and put on a dress just for fun, but I can’t. Not at the moment. And it still surprises me how seemingly simple and small things start to become large and exhaustive, all on account of health. Not until you’re straining to stand at the sink and overwhelmed by the exhaustion you feel just having to move your tooth-brush up and down, or discover that your arms and hands have turned to rubber after using them to lather up the shampoo in your hair, does it hit you just how costly all these little moves are. Not until the smallness of previous, everyday tasks suddenly reveal their enormity do you fully appreciate how much exertion it takes just tending to this business of being alive– and this is before you even go anywhere or do anything! It’s silly really. Still, this does not change the fact that I really need a bath and if I go one more day without one I fear I’ll reach an irreversible state of unclean and I’ll never get it back. I’m also sort of hoping that by sharing this very inappropriate and vulnerable reality with perfect strangers and a few friends on the internet, that perhaps it will motivate me, give me that final ‘push’ to take the plunge, even though my whole body feels like the human equivalent of mashed potatoes. Mashed potatoes with death gravy!

I open with this unremarkable and embarrassing truth about my life because I think I’ve become a little too serious about the outcome of my writing in the last year or two and I’m trying to remember the importance of light-heartedness. And humor. I’ve noticed I put an extreme amount of pressure on myself to produce posts that are equivalent to biblical scripture, instead of remembering that this is a blog, a documentation of a small silly life, and it doesn’t always have to read one way or another. I find that way too often the writing doesn’t meet my expectation–which isn’t even anything specific, it’s simply a personal note of “It could be better.” As a result, I scrap a lot of work, I start over, or I just abandon it halfway thru. This is not a smart or productive way to go about any art, so I’m going to try to stop doing that and also remember to have fun. Oh yeah, fun! I forgot about fun! Usually the things I really enjoy writing are the things that people enjoy reading the most. It always translates. Too often it feels like extremely tedious work, which I think it has to be sometimes, especially if you want to always be improving the quality of your work, but more often it should just feel good. There should be some amount of recreation in it–this is my passion after all. I do it because I like it and it makes me better. Too often the process feels like taxes. So, I’m trying to remember to enjoy the process and the outcome, and also that not every word I write has to be a thought-provoking useable quote to put by my name after I die. “I need to bathe.” -M Gelpi, 1984-2016.

It’s been kind of a stupid few days. For one thing, I’ve bit my top lip no less than four times while eating. It frustrates me that my mouth is this stupid and that it doesn’t learn the lesson faster. Is it really so hard to GET OUT OF THE WAY. I think, I am 31 now, I shouldn’t have to explain to my gums that hey, when there’s food in my mouth and my teeth are moving up and down? Do you think maybe you could stay out of the way? Not a big deal or anything I just don’t want to EAT CHUNKS OF YOU and also I don’t like the taste of blood. With anything. So maybe stay clear of my teeth now? Great thank you. Glad we had that totally necessary talk. Now maybe I’ll tell my head to stay out of the way of my fist when I’m punching stuff! Hah, who am I kidding, I’m too weak to punch things!

What else? Oh yeah, I’m starving. I never mentioned this before but I’ve been battling an addiction for a few years now: it’s sugar. It’s very real!! So I basically eliminated all processed sugar as of Sunday, and it’s getting easier I guess. But even it being easier doesn’t change that it’s still ridiculously hard. And half the time I think the answer is, don’t diet. If you’re addicted to sugar, just stay addicted. Get fat. Get diabetes. Die young. This isn’t worth it. A cupcake would make me so happy right now, why am I denying myself this easy promise of happiness? Why am I making life this much harder on myself? Kiddingggg. But truly, I was addicted. Am? I think I still am, I’m just not feeding the beast. It began shortly after I began the corticosteroids–my appetite, my cravings for sugar, and my intolerance for it all simultaneously exploded at the same time and only got worse with time. I also became extremely hypoglycemic and would wake up in the middle of the night starving and shaking. I knew at some point I would have to do something drastic, not just because I was clearly addicted to something I didn’t even used to like, but my body was also rejecting the very thing my brain was craving. So many of my migraines occur after eating something sweet, typically processed sugar. Not to mention, there is just way too much junk in my trunk now. And also under the hood, and the front and back seats. Mostly, I just feel totally out of balance. I don’t like my relationship with food anymore. I used to just eat when I was hungry and then not really think about it. This whole sweet tooth thing is exhausting and also never-ending. I literally never feel full and I’m bored thinking about it all the time. So it was time to quit. Right now I’m just trying to get used to feeling mild hunger or major cravings but not immediately shoving food in my mouth as a response. Especially when I’ve already eaten a healthy meal and I know I’m not actually hungry. It sort of struck me, this totally 1st world moment of enlightenment: Oh yeah, I don’t actually HAVE to eat just because I feel hungry. I literally forgot that I have that option: NOT eating. Only an American would forget this, I’m convinced. So that’s going well. Wait no actually it’s really hard and taking a major adjustment but whatever, it’s in the name of being healthier and I can get behind that.

This morning, I was lying in bed and trying to find the motivation to get out of it, my eyes scanning the room looking for something inspiring to land on. Window. Wall. Dresser. Monty! Then I thought hey, I’ll just lay here and talk to Monty. Sometimes I share my ideas out loud with Monty because NOT EVERYBODY HAS A BOO WHO WANTS TO HEAR THEIR COOL TAKES ON LIFE. And I was like Monty, don’t you think it’s kinda dumb how hard life is? I mean if we were talking about Life Round 2, like if this one were a dress rehearsal, I would pull for “Less hard stuff, more funny stuff” in the next one. I just think the script is calling for more humor, more casual fun. It’s like the architect of the universe was listening to a playlist and when he got to this part, Coldplay got stuck on repeat and so there was a somberness infused into the day-to-day to stuff. He needs to listen to Pharell, or better yet, the band Fun! They would mix it up in a positive way, I think. And I’m sharing this with Monty thinking this is pretty good stuff, and what does Monty do? But abruptly start licking his butthole. As if the house was going to collapse on top of us both if he didn’t do it at that exact moment. Right in the middle of my Ted Talk (more like BED TALK) about how life should be tweaked for the next go around. At first I was like OH REAL NICE MONTY but then I was like God, who am I to make you feel bad about this? It’s probably the shitty food I give you making your butt itch, even though it’s expensive as shit. This country has major food problems, for dogs and people! Whatever I mean that’s what they say.. I don’t really know anything about it.

I’ve been writing this dedication piece on gratitude because despite my life looking and sounding like a disaster, it’s actually great in a lot of ways and has some really amazing parts and people that I am crazy grateful for. I’ve been writing it for weeks, in my normal tortured way, and there’s some good stuff there, but I think I just need to calm down. The piece is not just about saying thank you to the many, many people who have reached out and offered help to me in so many different ways this year, even though they are who inspired the piece. It’s more about the new and intimate way I’ve come to understand and appreciate gratitude in my life, which began with me recognizing gratitude during parts of my life that I wouldn’t traditionally say thank you for. There were extremely tough moments, days, and months this year. And yet somehow, there would be these redemptive moments within the pain, where I felt grateful for the exact experience, even if it wasn’t enjoyable or was causing me pain. This was never traditionally my approach to gratitude. I said thank you when I recognized that something was good, and there were always plenty of good things. But there was a whole new light shed this year, particularly during this winter which has been challenging in a number of ways, and yet the struggles still managed to produce these amazing moments of love, kindness, help, laughter, friendship..all in the midst of what I’d normally consider “disaster.” I write about it because I am continually surprised and amazed when I feel gratitude sneak up on me inside–I’ve been blown away by its reliability regardless of whatever scenario I find myself in. It was always easy to say thank you when everything went my way. But it’s been a new and enlightening experience stumbling upon it even when I’m lost or isolated or feeling totally discouraged. That’s changed how I look at everything now, and it really lightens the burden of whatever I’m carrying when I remember to try and find it. Anyway, that’s what the piece is about. Hopefully my brain will stop screwing around and I’ll get it cranked out sooner than later.

In the meantime I want to say that while I don’t always feel worthy of the love, help, gifts, messages and prayers that are offered to me by so many people, I do constantly feel incredibly grateful for the support that me and those who care for me have been given. Every way I’ve been helped or encouraged, no matter how small it may have seemed, always presses me to be better and to try harder. All we can do is our best, but being loved and supported the way I have continues to raise the bar for what my best can be. Thank you! All of you. My life is a perfect example of how needing help can be a really beautiful thing and not something to be afraid of — it teaches me to trust in humanity and to humbly surrender and accept what I can’t control, and I think to the giver, it teaches grace and encourages kindness. Somewhere in the middle is gratitude for us both.

I think I feel encouraged and insecure enough now that I’m going to attempt to bathe. Thank you for helping me.

Health, Happiness, Hygiene

Today I was thinking about these petty things I struggle with. They’re a joke.

I’m in the midst of another virtual game of jenga with my trashcan. I stuff it as much as it can hold and then some, and then some. I have to stomp it down with my foot sometimes. I stack cups and cardboard things on top over and over until small towers emerge and a fragile city of trash balances on top. I avoid the alternative, which is to just take out the stupid trash, stupid. It’s a small walk–probably 45 seconds all in all. It’s funny how devastatingly huge the task becomes in my mind. I spend more time arranging the trash inside than just taking it out.

Netflix has become a problem and the reason is very simple: I would always rather pay a dollar than have to go somewhere. Thus, I end up buying virtually every movie that was only supposed to be a buck. Also, I’ve made a few questionable decisions in my movie selections. This is because when someone gets in line behind me I kind of unravel. I begin to sweat and all the movie titles start to blur together. I panic and get Coneheads and naturally never return it. Now I own Coneheads.

I won’t get into correspondence and sending letters in the mail, but I definitely have a couple of letters in stamped envelopes over a year old that have never made it to the mailbox. Disgraceful. Anyway, I was considering these petty struggles which are just a few among many. Life is full of small and mediocre “things to do” that I often dread or put off until I can’t anymore. I realize that the only reasons these tasks are anything more than tasks is that my mind has labeled them bad, annoying, a pain in the ass. When really they are just a few things in a string of a million things we will all do and then cross off our list. They’re all the same, it’s only our attitude that redefines them. A Zen Master described the essence of Zen as Doing one thing at a time. Tolle explains this as “Being total in what you do, to give it your complete attention. This is surrendered action- empowered action.” So I’m working on what I let take up space in my mind, on being conscious before I complain about something that is necessary and also just not that bad–Especially when I pay attention to the world beyond me, where actual struggles exist.

Like many people, I’ve been watching the events unfold in countries that feel very far off to me. I realize my life is somewhat sheltered here, and when I confront the news I feel a distant hopelessness. I remember hearing about the 300 kidnapped Nigerian school girls taken in the night. I felt angry and sad and followed the story for a while. But exposure to the story faded, and it seems my regard for it did too. A few months later, 219 of the girls are still missing, with low probability for their return. I haven’t thought about them in a while. Now there are other tragedies unfolding. I see the destabilizing of Ukraine at the hand of Pootie Poots (what my brother calls Putin) and the rising emergence and activity of terrorist groups over there. I feel awful watching it. But also I feel removed from it. I watch the news then eat spaghetti. Something feels off about that. In a few months I’ll see new tragedies, and maybe Ukraine like the Nigerian girls will fade. Or the world will end. Either way, I wonder what someone like me and my small life can do for the darkness unfolding. How can I bring any sort of light there? Especially when I’m trying to carve out time to return a Netflix movie here? That is a joke.

I’m reminded of a continual theme in Tolle’s teachings, which is that separateness is an illusion. We are all made up of the same billion-year-old stardust. We operate under the “Same in-dwelling consciousness.” So while our bodies and geography separate us, our lives unfold to one pulse. I imagine this is why we feel concern when we see a stranger cry, or why we’re happy for the good fortune of another. Somewhere in the depth of our unconsciousness, we’re feeling it too. Otherwise, why would we care? Technically it’s just strangers, and their pain or death won’t interfere with our afternoon in any way. But these teachings that connect the human spirit have always resonated with me. Many of the “dark” things I’ve witnessed in my own life seem to stem from people not recognizing themselves in another. I’ve done this plenty. When witnessing the sufferings and tragedies over there, first I must remind myself that their sufferings are mine too. Whether their effects are immediate or obvious doesn’t change their imprint on us.

That being said, I am not a soldier. I can’t help fight the good fight. Today I’m too weak to take a shower for instance, so the military is out. I’m not a war correspondent or a politician who can influence change. I am who I am, having a small sickly experience here in Louisiana with my dog. But I refuse to think I’m useless in all this–mostly because that take on life truly lacks creativity. My life is different from those I witness, here and there. But I think the way to have any positive influence on the world is through growing my own consciousness. It sounds selfish but at the root it is not. It means being honest with myself and making good of the strengths I do have; they exist for a reason. It means loving more, showing more compassion, opening up more, writing more, seeking truth more. Tolle’s teaching along with Joseph Campbell’s and a slew of others is that if my life can become more conscious, it adds to the collective consciousness of the world. That is how we can make our experience matter. Because I have to remember that my experience is theirs too, just the same. So if I seek and obtain light in my life, it can spread far beyond me. I continue to think and pray about the darkness in the world and how I can help it. Most answers say to begin with inner-me. So that is the start. And it’s aligned with something I’ve felt for a while– that there is no life too small to matter.

The same stream of life
that runs through the world
runs through my veins

-Tagore

Health, Happiness, Coneheads